Listening to neurologists caring for Multiple Sclerosis, to prevent their burn out. The SMART Project

It is often discussed about the real risk of burn out for the healthcare professionals, a multidisciplinary issue since it concerns many different professions and care contexts. Recent studies showed that neurologists are particularly affected by the risk of burn out, because of many different reasons, as organizational issues- that actually affect transversely the health care providers – or as the difficulties associated with the specialization, such as prolonged shifts, the 24hours availability, poor decisional autonomy, but also the loss of “joy in caring”[1].

The care of Multiple Sclerosis is one of the main topic of interest in neurology, because of the increasing incidence and prevalence of the disease, and because of the deep transformation in progress from a degenerative disease to a chronic condition, with the consequent benefits, but also complexities. With these aims, the SMART project (Multiple Sclerosis: the listening to the multiprofessional contexts of the neurological team) was born, designed and realized by the Healthcare Area of ISTUD Foundation, with the support of the Italian Society of Neurology (Società Italiana Neurologia SIN) and in partnership with Biogen. The title of the project mirrors the main aim of the research, to carry on an act of listening to, this time, the healthcare professionals caring for Multiple Sclerosis, represented by neurologists and nurses that compose the neurological teams. As a matter of fact, in the last years, several projects have been rightly dedicated to people with this condition, as opportunities to be more listened to and cared, in a complete way, integrating the clinical-therapeutic needs with the psycho-social ones. But, who does listen to the professionals who take care of them?

Narrative Medicine, as we have already said many times, has the richness and the great potentiality to give voice to all the stakeholder around a pathway of care, so not only who lives with a disease, but also who lives with ill people, the caregiver, and who clinically takes care of them. What it is less frequently said, is that narrative medicine was born for healthcare professionals, as a caring approach, able to improve the relational skills, but also the organizational and therapeutic competencies. In particular, the parallel chart tool allows the health care professionals to maintain a free and intimate space that the more and more technocratic and bureaucratic Healthcare system is sacrificing: the space for reflection and nutrition of the provider of care ’s emotional wellness. The SMART project had the aim to offer neurologists and nurses caring for Multiple Sclerosis this important space.

Thirty centers of care were involved in the project, selected for their dimension and geographical Italian representativeness– North, Center and South Italy, small-medium-big centers – and 105 professionals participated to the survey, sharing their testimonies on living the clinical practice and relationships of care.

The providers of care did not only narrate themselves, but they also participated to a quali-quantitative survey, composed of a section on their living the organization of the services of care, the test on Satisfaction and Compassion Fatigue[2] and two narrative medicine tools: the professional autobiography and the parallel chart.

The results will be presented soon, but we can make the first consideration. The SMART project had the patronage and the active participation of the Italian Society of Neurology (SIN), and this is an important signal of the will to care for the neurologist’s wellbeing.

Nowadays, The Italian Multiple Sclerosis centers are well-organized, more or less recognized by the healthcare directions, however, they are surely excellent centers, able to offer care services that are positively perceived by professionals. The other side of the coin is the working organization, more and more challenging and frustrating for a health care professional caring for Multiple Sclerosis: together with the uniform and objective increasing of people in care for this disease, it has been happening the paradoxical but corresponded reduction of providers of care. Also the relationships of care, often chronic and concerning young people, can represent an emotional burden more to manage.

The integration of all the tools used for this survey, from the Test of Satisfaction and Compassion Fatigue to narratives, allowed to obtain a so rich scenario, that we really wish this work could be widespread as much and as long as possible, representing a concrete starting point.

Meanwhile, at the last SIN Congress held at the end of October in Rome a poster on the main results from the project was presented. “Finally, someone takes care of us!” this is the facilitator’s feedback of the Multiple Sclerosis session when the results were explained. We could start with this “Finally” to make healthcare directions and stakeholders understand not only the need of protecting professionals in neurology but also the value and the excellence of the care centers that are changing the history of one of the most frequent and increasing disease. There are not only costs of the therapies and care services, but there are also value health care professionals to support and feed, and there are also people with Multiple Sclerosis that could have a more and more high quality of life and social role.

Degree in Natural Science at University of Turin, Italy. Project Manager and trainer at ISTUD – Health Care Area since 2010. Expert in health care organizational research and in the approach with Narrative Medicine, applied to national and international projects to analyse the organization and quality of pathways of care. Coordinator of training programmes ECM accredited (Continuous Medical Education system) addressed to health care professionals, as trainer and tutor. Coordinator of European projects, Lifelong Learning Programme funded, with a specific focus on storytelling. Collaboration with the Italian Society of Narrative Medicine and with international universities. Participation as speaker at several congresses promoted by scientific societies and Health Authorities.